Monthly Archives: May 2010

Elizabeth Ivy
TOUGH! Not even CRPS can keep K. Chandler Rosemont down, she is still working on her dream of a dance career.

Wednesday, March 03, 2010 By Elizabeth Ivy, Las Lomas High School

In the first purple room on the left in the Teen Care Center at Kaiser Permanente hospital, K Chandler Rosemont sat propped up by pillows with an IV attached to her left hand and a grand smile on her face.

The Las Lomas Senior had just been admitted to the hospital in January for the second time in a few weeks for pain control. Although her face was slightly swollen and her neck was spotted with yellow from the needle that had been planted there for a quarter hour, she seemed surprisingly happy.

Chandler was diagnosed with Complex Regional Pain Syndrome (CRPS) in her right hand and wrist. According to the National Institute of Neurological Disorders and Stroke, “The key symptom of CRPS is continuous, intense pain out of proportion to the severity of the injury … accompanied by intense burning pain, skin sensitivity, sweating and swelling.”

“Basically what it is, is because of stress and some kind of impact, probably from dance, all the nerves [in my hand] started freaking out,” said Chandler. “This is a disease common in 50-year-old men.”

On Dec. 5, Chandler first noticed symptoms; including, itchiness, swelling and severe pain in her right wrist. The following morning she had no control over the movement in her right hand.

“Nobody knew what it was. Every hour the pain [got] worse,” Chandler recalls. “My pulse in my right hand, they could barely feel it. My right hand was so weak and [it was] bright purple. There was no circulation. And [my right wrist] was all just ice.”

After she was admitted to the hospital for pain control, the doctors diagnosed her with CRPS and performed a nerve block treatment.

“So they’d go into my neck and put a really small needle in my jugular vein and then it would go in half way through the middle of my spine. And they would inject all this stuff into my inactive nervous system,” explains Chandler. “I didn’t have any numbing whatsoever … so I [had] the needle in my spine through my neck for 15 minutes just chillin’ there on a table. And if I moved it [would] hit an artery that [would] stop my heart instantly, so I [had] to have an IV in my arm.”

In addition to the nerve block, Chandler was also heavily medicated. She was taking Methadone, Dilaudid and Gabapenin, which are all stronger than morphine.

“The good side effects were that it helped with my nerves and my hand. The bad side effects were that I [couldn’t] walk. I had something called a gate reaction and I didn’t have any control of [my chest area] or sometimes my legs lock up when I walk[ed]. And I could only walk maybe ten steps without being exhausted,” said Chandler.

Chandler underwent the nerve block treatment procedure three times and stayed at the hospital for eight days in mid-December. She was scheduled for a fourth procedure; however, her hand was recovering more quickly than expected so the doctors sent her home. Recovery was going unbelievably well: Chandler had full control of her right hand and was no longer reliant on medicine to soothe it. She felt only a hint of the pain she had felt before.

“She’s already such a strong girl, and I’ve seen first hand how much stronger she’s become after going through so much pain,” sophomore Sydney Boral said. “I’m amazed at how optimistic she stayed. I’m so proud of her and I love her.”

Sadly, on Jan. 20, Chandler relapsed. The discomfort in her hand escalated rapidly and she was re-admitted into the hospital for pain control. After a three-day stay and yet another nerve block, Chandler returned home.

“She’s one of the most amazing, resilient and life-enhancing people I’ve ever met,” said Chandler’s English teacher Lori Gieleghem. “I wish I could confront serious illness with half of her grace and serenity. She’s my hero.”

Fortunately, catching CRPS so early on has nearly eliminated the chances of it recurring later on in life.

“I caught it in stage one and if it got into a higher stage, obviously it could have traveled throughout my body and it could have come back at other times,” explained Chandler. “But I got it so strong just at the beginning [that] there is no way [I could have ignored it].”

Due to the H1N1 pandemic, Chandler’s younger brother, Wesley Rosemont, was not allowed to visit her in the hospital.

“I went to the hospital to see Chandler, and they wouldn’t let me in the lobby. They ran out of wheelchairs so she couldn’t come down and see me,” he said. “I missed her and when she was in the hospital it was kind of hard [for me].”

Support from friends, family and even strangers has helped Chandler during her recovery.

“The support’s been great. The support has helped me recover faster,” explained Chandler. “It’s been great. [During] winter break, the Las Lomas Leadership came and sang to me here at my house and caroled to me. And Christmas Eve there was a ‘get better’ sign on my garage … And then I guess Leadership made a sign up sheet for bringing my family dinner.”

Chandler fondly remembers how compassionate people at Las Lomas were.

“I’ve met so many new people from [my accident] at Las Lomas, like new faces in the hallway that smile or wave or just say ‘hi’,” she said.

On the contrary, people in other public vicinities would judge her based on her incapacities. The medication she was taking made it difficult for her to walk without a severe limp and awkward shake.

“The looks that I would get … with my little shake versus being in my wheelchair. The looks I’d get from the shake were ‘That’s disgusting,’ ‘What kind of foul person is she,’ ‘What disease is she carrying,’ ‘How could [her mother] let her daughter get this way,'” Chandler said. “And the wheelchair [was] smiles and sympathy because people thought I was paralyzed.”

On Jan. 25, Chandler attended her first dance practice in nearly eight weeks. Despite the pain she still feels in her hand, she is again fully committed to dance and is overjoyed to return.

Chandler reflected back on her experience.

“[This whole experience] definitely makes you appreciate people who are handicapped and who are just disabled in general,” she said. “It just makes you think twice about everything.”

Before she was diagnosed with CRPS, Chandler was a dancing enthusiast. She has danced since the age of three and by the time she was eight, she knew her passion and career in life was dancing.

Unfortunately, her injury occurred during her dancing auditions for college.

“I applied to 11 schools and I want to dance at all of them. I did four of my auditions before this happened, and obviously I have seven left. So … for the ones until I can actually do them, we are sending video auditions because I have ‘extenuating circumstances,'” said Chandler.

Along with dancing, Chandler has always been interested in becoming a nurse.

“I want to be a nurse [and] this made me appreciate it,” she said. “I know it from both perspectives now … I know it from the patient’s perspective, so I know how to treat patients because I know what I wanted.”

Chandler’s perseverance and determination has not only changed her life, but it has also changed the lives of the people around her.

“I think her experience has inspired other people, including me, not to take advantage of the precious gifts we have, and Chandler has taught many people to never stop fighting when faced with a hardship,” said senior Melissa Mink. “I have grown to love and respect Chandler even more.”

Chandler explains what she will remember most about this whole experience.

“Hopefully how much I’ve grown from it … and just how when tragedy [hits], even though this wasn’t a tragedy, but something bad happens to someone, everyone drops everything they are doing to help that person out …. It changes everything. It changes your perspective.”

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For teen in pain, suffering is optional

Delmar resident is honored by Cleveland clinic for learning to deal with his chronic condition

By CATHLEEN F. CROWLEY, Staff writer
First published in print: Monday, May 3, 2010 BETHLEHEM — Connor Menneto felt pain that most of us can’t imagine. Diagnosed at 16 with a rare disease called complex regional pain syndrome, Connor’s left arm and leg burned in crushing pain.

He gave up baseball and basketball. He could barely walk. A small breeze set off the hypersensitive nerves on his skin. He quit school and refused to see friends.”He was so despondent and discouraged,” said his mother, Rosemary Menneto of Delmar. “He was a raw edge from being in so much pain all the time.”

“I kind of thought I would just lay on the couch for the rest of my life,” said Connor, who is now 18.

Little is known about CRPS. It typically appears after a trauma such as a broken bone. It’s as if someone turned on the switch that controls nerve pain and forgot to turn it off. The affected limbs may turn red or purple because the brain redirects blood to prevent blood loss as if it’s a real trauma.

Connor had broken his foot sliding into second base, which was probably the trigger for his CRPS. On a scale of 1 to 10, Connor said the pain of breaking the foot was 4 but the CRPS was a 10 or worse.

Doctors in Albany tried everything: painkillers, nerve blocks, spinal cord stimulators, epidural catheters and even a medically induced coma to reset his brain. After the coma, Connor felt better for a week but the pain returned and spread from his leg to his arm.

Connor settled into life on the couch. Home tutoring didn’t work because he couldn’t concentrate.

He wore shorts and a T-shirt and no sock or shoes. He held his arm straight, away from his body to prevent anything from touching it. Even air set off waves of pain.

“He could tell if someone opened a door or window anywhere in the house,” Rosemary Menneto said.

The baseball community and family members raised money to send Connor to the Pediatric Pain Rehabilitation Program at the Cleveland Clinic Children’s Hospital. In June, the Mennetos arrived holding a $25,000 check to pay for three weeks of therapy.

“Most kids come in with the approach that all things will be better when the pain goes away,” said Gerard Banez, the psychologist who heads the pediatric pain program.

For kids like Connor, it doesn’t work that way, Banez said. Their pain may never go away, so they need to learn to live through the pain. The clinic teaches them through hours of physical therapy and psychological counseling.

Banez’s motto is “Pain is pain. Suffering is optional.”

It’s not easy.

During the first two weeks, patients live at the clinic and are in therapy from 8 a.m. to 5 p.m. They have an hour for dinner and then continue treatment with a couple hours of recreational therapy.

Connor was hopeful but scared.

He was pale, slouched over and droopy-eyed with pain. The therapists took away his cane and ordered him to wear shoes and socks, and then put him through hours of painful physical therapy.

He unloaded on his mom when she visited him that first night.

“He kept saying ‘They don’t know what they are doing, it’s not going to work, they don’t know how much pain it is,’ ” she said.

Therapists forced Connor to bend his elbow, which was locked straight from disuse. They wrapped it to hold it into a bent position.

“It would literally take three grown adults to get it into position because the muscles would just fight it because the pain was so bad,” Connor said.He screamed in agony. He swore in frustration. He threatened to quit.

“You just think ‘Wow, these people are putting me through a ton more pain. What benefit can that be?’ It was horrible,” he said.

He saw some progress, but more disappointment and pain. Banez pulled Connor aside and told him he had to commit himself or leave.

Connor’s dad, John Menneto, who owns J.M. Rose Construction, wasn’t able to stay in Cleveland, but he called often. On one of those calls, he lit into Connor.

“Quit screwing around,” he told him, as Banez recalled. “You need to work with these people and we don’t expect anything less.”

Connor’s case was one of the worst the pain clinic had seen in three years of treating children with CRPS, Banez said. The level of pain, the fact that two limbs were affected and the atrophy made Connor’s situation tough.

The clinic doesn’t allow patients to talk about pain. Instead, they talk about what they can do today that they couldn’t do yesterday.

The philosophy began to stick. Connor started to see improvements. The therapist told his mom that his personality was changing.

“No,” she said. “That is the real Connor coming out.”

He stayed seven weeks instead of three at a cost of $60,000 but he left as a new person. Insurance paid a portion of the cost.

Back home, he continued his therapy and regained full movement of his arms, fingers and leg, surpassing the expectations of his therapists. He is playing baseball and basketball with his friends, he returned to school and is physically back to normal, he said.

Connor’s pain is about an 8 on the scale of 1 to 10.

“I learned how to live with the pain rather than live around it,” he said. “I do the things I want to do and not make decisions based on the fact that it’s going to hurt.”

On Friday, Connor received a Courage Award from the Cleveland Clinic at a black-tie fundraiser attended by nearly 1,000 people.

“He embraced and embodied what we try to impart to the kids here,” Banez said.

Some days, Connor wakes up and his mom can see his arm is purple, but he trundles off to school. They don’t talk about the pain scale anymore.

“The biggest thing about pain is your mind-set toward it,” Connor said. “If you let it encompass your mind and everything you think about is pain, then you’ll end up focusing on it and it will always be worse that it could be.”

The color is back in his cheeks, his gray-green eyes don’t droop anymore and dark curls tumble over his now peaceful face.

Sometimes, his parents just stare at him in disbelief.

“I am thrilled to hear him go up and down the stairs, pounding. To hear him laugh with his brothers, we hadn’t heard that in so long,” Rosemary Menneto said. “It could make me cry just listening to him run through the house.”

Cathleen F. Crowley can be reached at 454-5348 or by e-mail at ccrowley@timesunion.com.